Little help for sick and aged!

[janehill]

I will preface this by saying, please don't read on if you can't handle some venting. I desperately need to but you don't need to read it if it's not a good time. Save yourself!

Today I just about went postal on a colleague who told me I should "look into some wonderful services that are available" to me. I snapped. Maybe it's because I have no more patience for such cluelessness. Maybe it's because I have even less patience for such cluelessness from someone whose own mother received a breast cancer diagnosis 30 minutes prior to being hit by a truck (sad, shocking - but true) and faced brain trauma along with mastectomy and chemo.

If one more person tells me about all of these "wonderful services," I will scream so loud my dog will probably jump through the kitchen window in a desperate attempt to escape this crazy house!

I said, Listen here missy, my mother does not need a makeover and a free wig. My mother does not need someone to read Keats to her. My mother does not need stationary so she can jot down her feelings. My mother needs a home health care aide who can come every single day and help her with more pressing things like wiping her butt! Can you understand how insulting it is to trivialize her very serious condition by "reminding" me of the "wonderful services" of total fluff BS out there! It's tantamount to me visiting the refugee camps in Sudan, knowing the horrible conditions those poor people are enduring and offering them free makeovers. Please wake up!

She walked away - and I'm not even a little bit sorry! I wish I could have slapped her too.

Okay, I'm not quite as evil as I am sure I come off right now. I'm just tired and frustrated and sad and extremely, extremely, extremely disgusted with the way a very wealthy country like the United States treats their elderly and sick. Medicare doesn't cover skilled nursing, no sir they DO NOT. And if my mom needs such care, I can plop her into a nursing home (over my very cold dead body - I've visited plenty!), they'll wipe out her assets and then Medicaid will cover the outrageous 10K/month for the most dismal care anyone can imagine.

After a lot of research I was able to find an agency that provides home health care aides for no more than 8 hours/week to mom and it's been a blessing. But there is no government funding behind it, you can be sure. The only government service is JACC, which provides the same amount of hours and they won't overlap the services of another agency (like the non-profit one she's using). I'll stay with the non-profit and forget the government nightmare!

Believe me, I've called dozens of numbers from the American Cancer Society, the Lung Cancer Society, government agencies and every shred people have suggested. Eventually I hit a wall where I realized, no one is doing a thing for these folks who are in the greatest need of all - other than offering up a nursing home, a ride to the doctor on occasion and yes - a makeover so she feels better! Thanks but no thanks! (by the way, I may boycott Revlon, Loreal and Maybelline - just out of revulsion!)

Even all of the "wonderful services" are superficial at best. Please don't get me wrong, that's nice and fine for most people but when someone is really in need, really really in tough physical circumstances, it's insulting to offer them a free makeover and wig when they have far more pressing and immediate needs, like washing themselves.

I'm just terribly hurt by the insensitivity and stupidity of so many fellow humans.

In the last few months I have truly felt as though I were in the Twillight Zone. Like I'm the only person who gets this and everyone else is in Stepford-ville, walking around like everything's just dandy and thinking that I just don't want to be happy. Huh?!

Last month, when another colleague told me how there were "great services" when her mom had late-stage colon cancer and people would take her to the doctor, I said, My mother has an electric wheelchair - she cannot get a "ride" from someone - it's far more complicated than that. Then she said, "well, I'm sure there are volunteer services for her too - you're just closing the door without knowing." So I said, "can you take my mom next week for her CT scan? or at least, can you call around and help me find a volunteer agency that can do that for her - that would be great! She dropped it quick and has never made another suggestion again. See, it's easy to offer up empty and useless nonsense until someone calls you on it! Argh!

(See, I did warn you all, this is a bad post. Sorry. Promise to improve!)

[Patkid]

Where do you live?

I will be happy to call around for you w/ regard to the wheel chair adapted transport.

Pat

PM me and I will try to make some calls for you.

[Ry]

In my area we have a service that will pick up and deliver people to appointments and it has a wheelchair lift. You're right, we don't as a society value the old or the disabled and as such, they don't get what they need. Hang in there and try not to put someone through a window or something.

[mary colleen]

Jane,

No worries about venting, glad you did. Welcome, too.

Mary Colleen

[janehill]

Well, that was ugly but I feel better.

I think my situation is just compounded in multiple forms. I am an only child. My mom is handicapped (covered that already) and has needed my physical help since I was a toddler. She has cut family members and friends out of her life (even before the cancer). I am the ONLY person who does everything - paperwork, calling doctors, making appointments, keeping records, doing groceries, taking her to doctors, labs, etc. It's hard and most of you know this already.

I feel like a mouse on a wheel who runs and runs and runs but doesn't really get anywhere. I don't know how you all do it - it's admirable, I'll tell you that!

I wish she hadn't cut everyone out of her life so she could at least lay some of the emotional burden on them but I have to hear that too. It's all-encompasing and overwhelming. I cannot be all things to anyone - not even to myself - and I sure didn't sign up to play so many roles to my mom. Frankly, I feel as though I've been the mom my whole life.

Scarlett was so right, "tomorrow is another day" and I'm definitely looking forward to it and to being able to see things from a better perspective.

Good night.

[RandyW]

If it makes you feel better, Vent away. That is what this is for. Remember, you have to take care of yourself, to take care of others. glad you feel better today. Let us know if we can help with anything!!!

[Linda661]

Don't be embarrassed about venting -- it helps. I too am an only child who literally did everything you're doing, except the details of mine weren't for my mom's entire life, just for a few years and that was hard enough. I do believe in the archives you'd find some doozy vents of mine that sound like yours too!!

Only difference was that mom did use a nursing home (at her choosing). We live in the boonies on a farm and she wanted to be close to docs. and treatment centers for the duration of chemo/radiation treatments. Once she was "stable" we had planned for her to come home. We are fortunate to have a couple of good ones in our locale (plus a few horror story ones too). It was still a huge amount of work on my part and I did go in almost every day to do caregiving for her since the home would only do things like bathing on certain days of the week, but I could bathe her anytime using their facilities or get her extra snacks/feedings as needed.

Medicare DOES cover nursing home care, but only for up to 100 days (first 20 days are 100% covered and the rest is covered 80%) -- not a long-term thing and it is generally used at a doctor's request right out of a hospitalization that requires some transition therapy before returning home. Your mom would have to have some form of private long-term health care insurance to have a long-term nursing home stay covered; otherwise, you're right -- assets are consumed on a private pay basis until Medicaid can kick in...sad state of affairs for sure as you said.

Our area has a public transportation offering called Dial A Lift that has a wheelchair lift and they will do point to point transportation (home, destination, home....no waiting at a bus stop) at an affordable cost. Unfortunately, after getting mom qualified for that, I found it too was generic help and didn't even come close to what she needed so we never could use even that. The service would leave folks waiting for hours before pickup and that just didn't work when you're in a wheelchair, on portable oxygen that runs out fast, and really need to get where you need to be in a timely manner.

Nonetheless, you may have a service like this in your area that is run better than ours. Your local bus service would be who to call and find out.

I never could find any real help to alleviate the major overwhelm associated with this dx as the ONLY family member present for support needs either, so I empathize REALLY well about what you are going through. You're right, everyone just assumes that things are peachy on the day-to-day care issue and never really ask about YOU -- they don't dare as the system is set up to expect family to take care of a lot anymore. Extra hard, if not darn near impossible, for an only child with no other relatives/family to turn to for help.

What are you doing to take care of yourself, by the way?

One more thing: I didn't get that far the way things went for us, but I was about to explore community volunteer services through places like local churches for home aid help on some sort of a continuing basis. My mom was against it too, as mine also pushed everyone away from her life over the years and insisted I could do it myself -- I reached the point that I was going to bring in help anyway out of sheer personal survival.

Many hugs -- please do keep venting as much as you need to.

Linda

[Linda661]

Jane:

See if the following resource will help you find home help in your area that meets your needs:

http://www.respitelocator.org/index.htm

They admit it might not include everything available in your area, but it might help.

Linda

[janehill]

I have been blessed to know a couple of people who could TRULY understand my situation - and they're both only children.

You have to be in a position where it's you, only you, no one else there to make a call, fill out paperwork or drive your parent - then you realize how utterly insurmountable the obstacles can be (unless you're independently wealthy, of course). When money's always abundant, there are no needs.

For all of the money nursing homes are paid, the residents should be cared to on a 1:1 basis or close to it. When my mom fell and broke her leg last April, she went into a nursing home for 2 months until she healed (and she couldn't walk after that at all). I went nearly every single day, spoon fed her (her arm had lost strength) and cleaned her up - changed her clothing, etc.

My mom's been through SO MUCH. I am not religious at all but I find myself praying to whomever...please, please, please don't allow my mom to suffer. When it's her time, please take her quickly - that she doesn't have to suffer any more indignity and that she can die with an ounce of the independence and pride she lived her life with.

Thanks again Linda!

[Linda661]

Jane:

Your last post just brought me to tears.....the suffering we so don't want for our loved one, the indigity and seeming non-caring at every turn while we are in so much overwhelm and much responsibility to tend to ourselves with nowhere to go.....it's so, so true!

I wish your idea of nursing homes providing 1:1 care was true, but I've got to tell you that after what they are paid.....what filters down to wages for the nurses and aide caretakers isn't much -- most of them do it for the love of what they do rather than pay (not all, but most). I was fortunate to get to know my mom's staff (it was my job to watch out for my mom in EVERY way in this journey and she didn't even know the half of what I did to protect her and see to her needs). I even pulled going in when they didn't know I was there to see what the response was when her call light went on.....it was literally minutes that someone would come with their workload. I did a lot of that sort of thing to be certain my mom was taken care of in my absence. I had to....my mom got to the point where she was telling me she was being mistreated, but she didn't want me to worry about it (long story, but she had serious complications from this dx that made things really muddy for me to figure out what was what on her behalf). A lot of time I didn't have was spent figuring out what was true and what wasn't.

I still stay in contact with those nursing home folk too -- ours were, and still are, good folk with hearts of gold, even if they are overworked/underpaid and couldn't be everything I'd have liked them to be at the time.

Anyway, I hope the leads provided can help you in some way. If they don't, just "squeak" and perhaps we can find something else that will work -- my experience says that you've GOT to have help. I got to the point that I couldn't take anymore and was looking at walking away from everything just to survive myself...my mom passed the next day after I'd had enough and literally couldn't take the demands anymore...and I'm paying for it dearly in physical consequences of my own now.

You take care of yourself and keep in touch here, please, please.

Linda